The Amazing Camille

As I wrote earlier, back when we were being evaluated on how to treat Soren's Infantile Spasms, Soren was admitted into UCLA for observation. Here he met a beautiful little girl only a few weeks younger than him named Camille who was, unfortunately, further along in her journey with Epilepsy. Along with Camille, we met her fantastic parents, Julie and Steve. Again, in a previous blog, I fully admitted to cheating off Julie's paper, taking all that she'd learned about Epilepsy and applying what I could to Soren. And, to be perfectly honest, one of the reasons it took me so long to ask for help was because, seeing what Camille has gone through so far in her short life, I felt that, in comparison, we didn't have room to complain.

Camille has many elements to her diagnosis. Besides Infantile Spasms, she has been diagnosed with Cerebral Palsey, Cortical Visual Impairment, she has a feeding tube that has caused her many issues and prolonged hospital stays, she has a Dysphagia, which is a swallowing disorder, Gastroesophageal Reflux Disease, and Immunodeficieny. It appears that it is Camille's Immunodeficiency that is causing her Epilepsy. Currently, Camille receives monthly infusions of IVIg (Intravenous Immunoglobulins) to treat her Immunodeficiency (Hypogammaglobulinemia) and to control her seizures. The great news is that Camille has achieved seizure control with high dose IVIg treatment.

Like Soren, Camille's Infantile Spasms have caused global developmental delay. So she also does a full spectrum of therapies to build her strength and further her development. And I must say, she is one of the most amazing kids I've met. Despite many hospital stays and over 1000 seizures at her worst, Camille continues to get stronger and more interactive. Camille gives me lots of hope with her strength and willpower.

Please check out

Camille's Website

which, because Julie put it together, is CHOCK FULL of information on Epilepsy, Treatments, and a sobering

video

that really helps educate how devastating intractable seizures are.

Amy

The Sith Witch

After Soren's first stem cell injection in January of '05, he was still in a rather bad place. He was on two AEDs which were not stopping the seizures and had the side effects of being appetite suppressants, so he wasn't eating well and was losing weight. Now, this was rather tricky. As you could see from the pictures in earlier posts, Soren had A LOT of weight to lose after the Summer of Steroids. Once we stopped the steroids, Soren slowed down his eating and was feeding off his own fat. But then, on these two drugs, he was just shutting down. Before our first stem cell injection, we went to the neurologist and got him checked out and weighed in. Two weeks after the injection, we returned to the neurologist. Soren had LOST about 5 pounds. That's NOT what kids his age do. So, though we wanted to have a somewhat controlled experiment as far as the stem cells went, we just couldn't. We had to get him off one of these drugs. So we started weaning him off Topomax (or Dopomax, as the moms call it) to make sure he didn't keep losing weight. Still, in order to get enough calories in him, he had to drink Pediasure three times a day.

As for the stem cells, while we saw some progress, we knew we needed to keep trying alternative options while we were waiting for them to take full effect, if we were lucky enough for them to have any effect at all.

So we went to an osteopath. Now, let me say up front that I have nothing against osteopaths. I don't want osteopathic hate mail here, for Pete's sake. I wouldn't go taking my son to someone who I thought would harm him. That being said, we dubbed this osteopath the Sith Witch for a reason. While she was the size, shape, and age of Yoda, she had the bedside manner of the Emperor. She was pure evil.

Now, I know some of my fellow parents who have taken their children to her may feel I am gilding the lily. But, I speak from my experience, and there is no lily gilding going on here. First of all, anybody who goes to her is DESPERATE, just like we were. You have to make an appointment, which, because there are so many sick kids with so many desperate parents, is MONTHS in advance. Then, IF she accepts to take your child, you have to go weekly for about 6 weeks. So you set up those appointments as well, just in case you're "lucky" and she accepts your kid.

Then you have to get there. I know people who have traveled across the country to see this woman. For us, it was merely a trip heading south. I will say no more as to her exact location and personage for fear of defamation of character or the Sith Witch cursing me in my sleep.

We made our appointments. We took Moira out of preschool since it was going to be an all day excursion. And we all piled into the car for the journey. When we arrived, I was taken into a room--ALONE. And there I was quizzed by the Sith Witch. Now, as the mother of Soren, the person who carried him inside her for 9 months, I had gotten used to being asked questions about my pregnancy with this now debilitated child. I didn't like it, but I was used to it. How did the pregnancy go? Did anything unusual happen? Did I take folic acid? Did I drink? Do drugs? Smoke? Blah, blah, blah. No, no, no. Normal pregnancy. Get off my back!

But the Sith Witch had a way of asking this questions that put such blame on me it was horrid. When she found out that I had Soren by scheduled C-section, it was as if I had taken the knife and cut him out myself. Doctors often ask about the birth because there could have been birth trauma that caused the seizures. Well, since he had no birth trauma, this isn't the answer. But the Sith Witch couldn't just leave it at that. "You mean you never went into labor?" she asked horrified. Um, no, I didn't. I went through enough freakin' labor with the first kid who was then born by EMERGENCY C-section. Talk about trauma. I wasn't going to go through that again!

Then I told her that I had experienced some Braxton-Hicks contractions weeks prior to Soren's birth. "How did you know it wasn't actual labor?" Excuse me? Because I've been in actual labor, bitch, and this wasn't it! In actual labor, I feel like my eyes are going to come out of my ass. I think I know the difference.

Next was breast-feeding. Now Soren never caught on to breast-feeding. I tried for 3 weeks. I had to go back to work after 6 weeks. So after 3, I admit it, I gave up. So while he didn't get the benefits of sucking on mama's teat, I pumped milk for 6 months from those engorged babies, so Soren got plenty of the good stuff and my boobs have paid the price. But did the Sith Witch appreciate this? Did she realized I'd sacrificed all I could for my child? No, I was clearly a horrid mother who did not try hard enough to nurse my child. But again, THAT was NOT the cause of his seizures. I know kids who nursed 'til the cows came home, but still had seizures. So lay off!

And it continued with my being horrible for feeding him baby food from a jar (while I admitted I did as much fresh as I could and the jar was not the norm) to her saying that I was having him do too many therapies all once.

After grilling me within an inch of my life, she then took Soren into a room on his own. Alone. Aaron and I were not allowed in. This is how she did her assessment and how, if he was deemed worthy, she would do her "sessions." For all we know, she was smokin' crack and playing solitaire. While the Sith Witch assessed Soren, I told Aaron, trying not to break down, that I hated the thought of returning to this place after what she put me through. But I would do it for Soren. After her private time with Soren, she spoke to Aaron and me together (the kids were being watched by an assistant). She said that she would take this case on. However, she was concerned with the lack of fresh food (whatever).

In the end, we smiled and shook hands, paid our money, piled back into our mini van, and got as far from the Sith Witch as quickly as we possibly could. Again, I told Aaron that if we had to do this, I would be strong and do it. The drive, the humilation and accusations. If it helped Soren, I would do it. But as I drove, Aaron made the executive decision that the Sith Witch was not going to help our son. He called on his mobile phone, canceling all our future appointments.

We've all heard of the Wicked Witches of the East and the West. And good Glinda of the North. But we've never heard of the witch that resided in the South. Well, I've met her. The Sith Witch of the South lives. I do hope someone drops a house on her very soon.

Amy

Soren Turned onto his RIGHT Side!

It's true!

Two weeks ago, when Soren started turning to his side, he was always turning to the left. As many of you know, babies tend to pick a favorite side to roll to before moving on to the other side. And turning left made sense for Soren because he used to seize contracting the muscles on his left side. Soren's therapists would ask me at each session if he was still only rolling to the left.

So he was on the floor today, exercising, turning left, sometimes getting to his belly and getting stuck. I had just rolled him back onto his back. He was kicking and squiggling about. I sat down to work and he was suddenly on his RIGHT SIDE!!!!

Again, I was so stunned, I didn't grab the camera (I've got to get better at this). Instead I grabbed the phone to call Aaron. Then, while talking to Aaron, Soren got annoyed with being on the right and rolled back to his back. Still, he was there. Even if it was for about a minute. He rolled to the right and he got there all on his own!

So things are changing. Soren's getting stronger. And I will have my camera ready the next time he does it. Promise!

Amy

Soren's Mother's Day Gift

I have to say, I was rather lucky on Mother's Day. Moira made me a beautiful hand-painted, flower-shaped coaster. Soren gave me a personally decorated frame with a photo of the two of us. And my husband got me a MUCH NEEDED massage. We've had the same masseur for years and he noted that he's never felt my back so tense. Yeah, no kidding!

But, the best Mother's Day gift was the extra one I got from Soren. As of that day, Soren was seizure-free of Infantile Spasms and tonic-clonic seizures for a YEAR!!!!! Wahoo!

And, on a side note, he has been busy turning back and forth to his side every day like a pro. When he first started 2 weeks ago, to get his arm over to his side, he had to use brute force. Now he can bring it to and fro without any effort.

Here's to being seizure-free! Happy Mother's Day!

Amy

Stem Cells: The Good, the Bad, and the Hopeful

People often ask me about the stem cells and why we have to go to the Dominican Republic. And I feel that, since we're asking for donations, I should tell you all I know--the good, the bad, and the hopeful.

First of all, why the DR? Simple, because we can't do it in the US. The FDA needs to do testing before stem cells are approved in our country. And such testing is barely being allowed because of the political landscape of our country. If the FDA is ever allowed to do complete testing, by the time it was all approved, it would really be too late for Soren. Due to his developmental delay, we feel we need to do as much as we can as soon as we can. We can't wait until he's 20!

So the choices for getting stem cells are out of the country. Mexico does some injections, but the stem cells there are fetal stem cells, not embryonic stem cells. I think there are places in the Ukraine that do embryonic stem cell injections--but that's even further! So, the DR it is.

What's the difference between embryonic and fetal stem cells? Embryonic stem cells are harvested in Eastern Europe from aborted embryos that are between 8-12 weeks old. At this stage, it is believed that the stem cells are pluripotent. This means that at this point of development, they can become anything. This is where doctors in the US are worried. Their fear is that if the stem cells can become anything, why can't they become cancer? Not to be cavalier, but for us, cancer is the least of our worries. We'd like our son to walk and talk some day. Fetal stem cells are further along in the process developmentally, so the thought is that they have less potential to fix the body. That's why we go for embryonic stem cells.

Why Eastern Europe? Well, abortion is a common and accepted form of birth control there. The women are approached, from what I recall, when coming in for a 2nd abortion. They are asked if they would like to donate the embryo. If they say yes, testing is done on the woman for Hepatitis B and HIV. The stem cells themselves then undergo further testing to make sure they are not contaminated.

How do they work? Theoretically, the stem cells get into the body, find the problem, multiply, and fix it.

How are they given? Soren is given two injections: one intravenously (in a vein) and one subcutaneously (in the muscle). Another good thing about stem cells is that you don't have to find a match, as with bone marrow transplants. With stem cells, one size fits all.

But more controversy crops up regarding how the stem cells are administered. Doctors in the US don't think that the stem cells can cross the blood brain barrier to the brain. Thus, for brain problems, they feel that the stem cells would have to be injected into the spinal column in order to make it to the brain. But I know plenty of people who disagree. Me, obviously, for one. And I have met many people in the DR getting injections for themselves or their kids who disagree. And if you met Clayton, the boy I wrote about before, you would disagree too.

Who does them? It's all arranged by a Los Angeles-based doctor named Dr. William Rader. Now, I'll be honest, if you do a web search on Dr. Rader, you'll find rather disparaging things. He's on quackwatch.com. He's had articles written against him in various newspapers. Believe me, we've heard and read it all.

But, more importantly, we've witnessed Clayton first hand. And when you have that, all the disparaging remarks disappear and Dr. Rader becomes your shining beacon. Yes, in many ways, it's a leap of faith. But we feel that this leap has paid off and, with subsequent injections, will continue to do so.

Why so much money? Yes, the first injection was $25,000. Each subsequent one is $8,500. That in itself is a lot of money. Add in travel and lodging, and you have an expensive medical trip. One reason, I think for the high price is the screening process. You want clean stem cells and doing that, running the facility, costs money. Second, think of what your medical procedures would cost if you didn't have insurance. It would be a pretty penny, that's for sure. Until it's legal in the US and paid for by insurance, this is the cost for our possible cure.

Now, if you want to read the good, go to Dr. Rader's sight at

Medra for Stem Cell Therapy

And go to their home page to watch

Clayton's Documentary

to learn about Soren's friend Clayton who has done so REMARKABLY because of stem cell injections.
And, in all fairness, if you want to read about the bad, go to quackwatch.org for a

Negative Stem Cell Report

But whatever you glean from this information, know that for us, stem cells, like Obi-Wan, are our only hope. That is why we are going back in December and, with your help, again next May or June. We feel that the stem cells are, indeed, mending the problems in Soren's brain. And with the seizures stopped, we are hopeful for Soren's progress.

Thank you for all your support!

Amy

Stem Cells: Meeting Clayton

After the summer of steroids, we tried various other AEDs to no avail. Soren was seizing like crazy. He was holding his breath and turning blue. We had an oxygen tank on hand during his seizures. We were in a very, very bad place.

Then my friend Julie told me about another mom whose son had gotten stem cell injections and the injection had been their miracle. I contacted this mom, Azita, and learned all about Clayton.

Unlike Soren, after Clayton was born, he was developing normally, hitting all his milestones. He was doing really, really well and his parents, Geoge and Azita, had no need for concern. But then, at 6 months, Clayton started seizing. Like us, they tried many AEDs. They would have "honeymoon" periods with each drug where the seizures subsided, but then they always came back.

They tried the Ketogenic Diet, which is similar to Atkins in that it's high in fat and low in carbs. It takes a lot of persistence with measuring and weighing everything the child eats. Again, they had a honeymoon period, but then they lost seizure control.

They then tried the Vagus Nerve Stimulator or VNS. This is a small device, similar to a pacemaker, implanted under the skin near your collarbone. A wire (lead) under the skin connects the device to the vagus nerve in your neck. The doctor programs the device to produce weak electrical signals that travel along the vagus nerve to your brain at regular intervals. These signals help prevent the electrical bursts in the brain that cause seizures. Again, Clayton did not achieve seizure control.

They tried every therapy in the book, but nothing was working and Clayton was only getting worse. He had lost his ability to hold up his head and roll. He had to be fed with a dropper. He hadn't had a natural bowel movement in 9 months. They were out of options.

They heard about a Los Angeles doctor who did fetal stem cells injections in the Dominican Republic for various ailments. Desperate, George and Azita packed up Clayton and went. Within 48 hours of their first injection, Clayton had a natural bowel movement. It was worth the money just with that!

But more amazing things came to follow. He was able to be spoon fed again. His body began to regain strength and control. I met Clayton after his second injection. When I met him, he still wasn't sitting up or rolling over. The next time I saw him, he was on the floor, determined to roll over. And I witnessed him do it. Soon after mastering this, he worked on his army crawl. But then he wanted to move right on to walking. Which, after his 3rd injection, he now does. He can also sit independently and, after his 4th injection, is now putting together the "cause and effect" of toys. Oh, and he's now seizure-free!

After seeing Clayton the first time and hearing his story, we knew we didn't want to wait until we had done more meds, the Keto Diet, and a VNS. We wanted those stem cells to start working as soon as possible. If we had to try more meds and treatments in the mean time, so be it. But, as far as we were concerned, time was a wastin' and we had to go--NOW!

Amy

A Special Thank You to a Special Boy

I must take time out to thank Fyn Stec and his parents Dayla and Paul. Fyn is a sweet boy who is almost 5 years old. About a month and a half ago he was diagnosed with a form of liver cancer called hepatoblastoma. He has been undergoing aggressive chemotherapy and, fortunately, the tumors are responding to the treatment and shrinking. Fyn's folks have one insurance that will pay 80% of his medical bills. That leaves 20% of some very expensive bills. Thus, when word got out about Fyn's condition, people starting giving of their hearts and their pocketbooks to help Fyn's parents with these mounting expenses.

Dayla's friend Cindy set up an amazing fundraiser in honor of Fyn hosted at Cartoon Network. Artists gave their work up so willingly that the walls of the studio were covered. There were sculptures, scarves, dolls, and t-shirts. Just the most amazing collection of work I've ever seen. And in the end, they raised over $41,000 for Fyn's fund! People's generosity was astounding.

But what's even more astounding to me is that Dayla and Paul then turned around and gave $10,000 to Soren's Stem Cell fund. Despite going through such a hard and horrible time, they wanted to give to Soren, having known him since birth and seen his struggles. Thanks to their generous donation, we will now be able to go to the DR two more times.

So, I want you all to go to Fyn Stec's Blog. Read his story. And donate to Fyn's Fund! This little boy and his amazing parents need your help!

Amy

Cheating Off Other People's Papers

It's true. I'm a big old cheater. I, like many others, have been thrown into this horrible world of epilepsy. And I do not have the brains to read all the books or really understand it all. It takes all the energy I have to do what I manage to get done. Thanks to cribbing off other's hard work, I've managed to get Soren where he needs to be.

The main person I've cheated off of is my friend Julie. I've mentioned before that her daughter Camille and my son Soren were put in the same hospital room. And thank goodness they were. Julie has been a wealth of knowledge for me. She reads all the books, she knows all the facts, and she's met all the people. She's met so many kids who have or have had Infantile Spasms that she put together a party for us all to chat. She was the one who found out about another mom, Azita, whose son Clayton had gotten stem cell injections.

This is the next person I've cheated off of. Azita and her husband George had been through a similar hell with there son Clayton as we had been with Soren. Upon meeting them, we decided to get Soren his first stem cell injection, which I'm going to talk about in my next post. But by meeting Azita, I got hooked into an Epilepsy Support Group in Pasadena that she co-founded. That has provided us people who understand what we're going through and lots of great (though often painful) information.

Her fellow co-founder is Jane. I wrote about Jane's daughter Maddy being in the hospital in an earlier post. Maddy is out of the hospital and doing better now that she's off a drug called Keppra. Jane's goal has been to educate others with her experience so that they can make the best choices for their kids.

I could go on and on because everyone I've met on this journey has helped in some way. It's just unfortunate that I've met so many people in the same boat. As my friend Karen, whose son Ari is also struggling with seizures, once said to me, she wished the reason we all met was because our kids all had Athlete's Foot. Unfortunatly, that's not the case.

But I am so thankful that I have found all these people who are so wise and have helped guide me in giving Soren the best he can possibly have. Thanks for letting me cheat off you.

Amy